What does "Bringing Awareness" or "Being Aware" actually mean and what do we do with it? I knew I wanted to write something this month about Childhood Cancer Awareness since it is September. I was putting it off as long as I could and taking my time as to what I wanted to share with you on a subject that is so dear and close to my heart. I have so much to share. One of my dreams is to someday write a book on Jacob's journey in hopes that it would help someone else or as I mentioned before, bring awareness. Awareness means, knowledge or perception of a situation or fact. Awareness of what it means to be a part of the childhood cancer world. Those of you who followed Jacob's story on Caring Bridge might of heard this before but I'll change it up a bit since we were in a different time in our lives last year. We were still fighting.
The picture I am sharing today was taken on September 24, 2015. I remember that day so clearly. We had a long day at the clinic. Jacob was receiving Pentamidine (which is medication thru IV) and it always took so long to administer. It is a medicine used to fight infections and since Jacob's immune system was not strong yet, he needed it. Anyway, after that appointment we had to go to the radiation doctor for a quick visit and we were not going to drive back home to New Braunfels just to turn around and have to be back in San Antonio in a couple of hours. So I took advantage of being there and took Jacob to Gino's Pizza Place. He had been wanting to try their pizza for a while. So here it is. I took a snapshot of him while we were waiting. He also got to put his signature smiley face on the wall behind him. I'll have to go back and look for it someday.
Back to being AWARE.... In the childhood cancer world, it means being aware of how difficult it is to see your child have to endure so much pain and so much uncertainty. Of how the hospital becomes your second home and the nurses and doctors become a part of your family. Being aware of how our children and teens have to face adult situations that we try so hard to shield them from. Sleepless night, medicine given around the clock, helping your child as they hurry to the restroom because they are going to be sick. Assuring them they are still beautiful or handsome as ever with or without hair. Checking on them as they sleep through the night to make sure they are still breathing just to have them wake up and say, "Mom what are you doing?" Answering or trying to answer difficult questions like "Am I going to be ok am I going to make it."
Many of you may not be aware. I know I wasn't. Before my family got affected with cancer, I was not aware. I knew about it but I was not aware of how cancer tries to destroy you. Now that we know about it, we cannot walk away. As I read an article from another mom who lost a child or teen to cancer, she mentioned how once your in the childhood cancer world, how hard it is to get out. That is so true!
We fought along side Jacob for three years and that is all we knew. We knew how to pack for the hospital in such short notice. We knew what things to take to make him feel comfortable. We knew how to spend all day together without getting on each others nerves. We kept logs of everything that went on at his appointments. We kept up with his weight, his color, his sleeping patterns, his medicines, his intake of fluids, and the list goes on and on. But now that we don't have to, we are lost. Trying to fit back into a world that we were so apart from for those three years. A world with a huge void in it because our Jacob is no longer here. As the other mom said,"We were happy fighting because it meant that he was still here. It might sound weird or difficult to understand but that's what it means. He would still be here. We will not stop fighting. We will continue fighting in memory of Jacob and for all those other teens and children that are still fighting right now. We will continue to keep Jacob's dream alive by helping kids climb back to the top, one step at a time.
It's going to be a year next month and again it's been difficult not having him here to hug, to listen to , to take him to Game Stop but we do have hope that we will see him again someday.
So please take a moment to be aware of what it means to be fighting against childhood cancer. Support families who are in this battle by advocating for better medical research. Help families by supporting organizations that reach out to them so that they know they are not fighting alone. I'll leave you with this poem that was posted on the hospital floor we would stay at. I always enjoyed reading it.